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Month: September 2015

I have always found people fascinating. I love to watch how people interact with each other, how people handle different types of stress or excitement, how people relate to one another. It’s a never-ending source of wonderment for me to observe all the millions of tiny ways people differ. These observations have (I hope) allowed to me to read people, and understand their point of view. It has made me less angry when asked a rude a question because I can easily see it from the asker’s side. It has made moments of someone’s joy even more exciting when I know so many of the underlying emotions they have experienced up to this point. It has, in effect, allowed me to get into people’s heads, kind of a like a psychic stalker, but a really friendly one.

Don’t get me wrong; I’m not like a superhero. I can’t read minds, and I don’t always interpret people’s emotions and reactions correctly. But I make a concerted effort to understand people and their background and why and how they became who they are.

The more I developed this sense of empathy, for lack of a better word, the more I used it. And I have used it so often that it has, at times, become somewhat of an obligation. If someone tells me something that should make me angry, I feel like, because I can more easily understand their point of view, I have less of a right to be angry, because I know why they said what they said. I know that they are having a bad day, or were just honestly curious, or misinterpreted the situation. So I let my anger (or whatever emotion is appropriate at the time) dissipate, until it fades away into nothing. And then I move on.

At least, that is what I thought I have been doing. The thing about having a kid like Joshua, who is not totally typical, is that you get a lot of questions. A. Lot. Nosy questions, nice questions, rude questions, friendly questions; all of it. And I used to do pretty well with answering them. After a while the sheer volume became overwhelming (or what felt like volume – I freely admit that it could be that my tolerance for questions has lowered considerably in the last 2.5 years), but I still did my best not to react emotionally to those questions. Thanks to my superpower, I could see that everyone meant well. I could listen to their question and hear the real question they wanted to ask, and I could sympathize with them over being nervous to ask me or ashamed of their lack of knowledge.

The truth is, I was reacting emotionally. I didn’t realize it, because I kept it hidden. I refused to acknowledge it. Denial is not just a river in Egypt, y’all. I told myself that there was no need to still be so emotional about Josh when I should only be grateful.

But emotions, like so many other things, have a funny way of creeping up on you, and soon enough I could see their impact even while trying to deny they existed. I could see myself changing, transforming into someone I didn’t recognize. Someone who was lost. Someone who used to have absolute confidence in God’s plan but now wasn’t sure of anything. Someone who was growing increasingly bitter over having a child who needed special attention. Someone who used to be able to find genuine joy in the accomplishments of others but who now goes out of her way to avoid others just so she won’t have to pretend to be happy for them. Whether I let them show or not, my reactions and feelings were changing me. It was like a slow drip, a slow break, a slow crack that, at first, only showed to the closest observers. But as the crack grew longer and wider, it became more and more obvious.

What’s funny is that it isn’t just the rude comments or nosy questions that bother me. It’s every comment, every statement about Joshua and his delays, or even seeing a child Josh’s age who was so far ahead, that slowly, slowly gave way to those cracks.

Josh is doing really well for all he has overcome!

Crack.

Joshua isn’t so far behind now!

Crack.

How old is he? But he’s so small!

Crack.

We can put Josh with his real age group, but he might do better with the babies.

Crack.

He probably needs a feeding tube.

Crack.

He needs another specialist.

Crack.

He likes to watch the other kids run around on the playground!

Crack.

Did it take him this long to get inside the building?

Crack.

And I do know that none of these comments, or other comments made, are meant as anything but encouraging or informative. They aren’t attacks on me or Josh; they aren’t commentary on my parenting abilities; they aren’t meant to provide anything but helpful advice.

I’ll be honest with you and say that I am just tired of questions and comments. I am tired of people telling me that Josh accomplished something and how awesome it is because of how far behind he was. I am tired of people asking me his age and then looking confused as they try to figure out why a 2.5 year old looks like he is just starting to walk. I am tired of medical advice from random people at the grocery store. I am tired of being congratulated on how well he is doing every time he walks down a hallway. Because while I am so very proud of him and all that he does, I don’t see any other kids being congratulated for walking down a hallway.

I know Josh is not the only atypical kid in the world, and it’s not that I don’t think other kids are struggling.

It’s more that some days, I just want to be a parent of a two-year-old. Not a parent of a miracle baby, or a toddler who just started to walk, or a parent who already knows what an IFSP and an IEP are. I just want to pretend that Josh is typical and that everyone is like him, instead of him being the odd man out. I want to commiserate with other parents on how my silly boy is running through the aisles of Target while I try to catch him. I want to stop planning my weeks around specialists that are only available in the middle of weekdays and are located 7048230 miles away.

And, because there is always one person who says this to me – I know how far Josh has come. I am not trying to take away from his hard work. He is doing so well. He talks a ton; he is responding well to therapy; he is charming and super cute, if I do say so myself. I know all of these things because I have been there from the word go.

But to have a kid like Joshua can be overwhelming at times. It can be so isolating. I don’t know any other parents with a kid like Josh. I know a lot of parents of preemies, but Joshua seems to be an atypical preemie, too. For whatever reason, he is taking his own little path, and that’s cool. I get it. He is who he is. But I’m not who I was. And I don’t know how to be this new person, who is bitter, and unsure of herself, and lives in fear that at the next routine check-up they will find something terrible. It doesn’t suit me. And I don’t like it.

So I am trying to get back to the person I used to be: confident, and cheerful, and content. I can be those things. I don’t think things will ever be exactly the same as they were before Josh, but what mother isn’t changed by her child? I want to focus on the blessings in my life, and use my powers for good to remember that Joshua is so loved by so many people, (and for this I am truly grateful) and that questions or comments only hold power over me if I let them. I don’t know exactly how to go about this, but I think acknowledging it is a good start.

This is another one of those posts where I don’t have an ending. I do have a unicorn: